Over the last 4.5 years, I have visited doctors sporadically. I would generally only see a doctor/doctors for up to three months at a time largely just due to frustration. I would take a long break for several months and eventually my symptoms would be so bad I wouldn’t have a choice but to go back to the doctors and try again. Visiting a doctor and getting a wrong diagnosis over and over is frustrating by itself though. If one more ENT suggested acid reflux, I was going to throw something. How is it that virtually no ENT or otolaryngologist knows what ES is anyway? The worst was an experience many people on here had. A doctor told me there was nothing wrong with me and that I had to “get used to it.”
Recently, I’ve even gotten frustrated with people who know anything about ES. I hope that eventually I’ll meet a doctor who really knows their stuff about ES, but lately everyone thinks they are an expert, which is so wrong. I waited two months to get a panoramic x-ray at my dentist. I called and explained my situation and asked if they could do that. They confirmed. Then when I showed up… “Oh we can’t diagnose you with a panoramic x-ray. We have to do a CT Scan, we will not accept your medical insurance, and it will cost over $500.” Let’s just say I was very angry after that. I knew that of course you CAN diagnose ES with a panoramic x-ray, but if they were too clueless to realize that, I was not going to fight them on it just to go to the trouble to get the x-ray and have them not know what they’re looking at. So I’m back at square one yet again. I have another appointment in two weeks with yet another new doctor (this is number 6 I think). Ugh!
Just a side note though that there are a few doctors out there who are gems. I found myself at a neurologist at one point who was very concerned about me, had me get a tissues MRI (no bones on it though so perfect results), and then told me he personally could not help me but wished me the best and to let him know when I finally got my diagnosis. Nice guy.
Also, even though I’m new to the site, you all are very encouraging. I’ve had a few people in the past couple weeks (who think they are experts) tell me that there is no cure for ES or that I don’t want to get neck surgery anyway because it’s too invasive. I actually didn’t hold my tongue on the last one and told them to try ES for themselves then. Ha!
Anyone else have bad doctor experiences?